Haley and I traveled to Maryland again today for her post op appointment. This was our third trip in the past month. Dr. Henderson was pleased with her incision--it is healing well. He was also pleased that she has still not fainted since the shunt revision surgery. (Aren't we all?)
Anyway, we talked about her incessant pain, and he looked at the MRI of her low back that she had taken last month. This, along with the results of her urodynamics studies (to measure her bladder function) and her physical exam, led him to diagnose her with tethered cord. He explained that the spinal cord is held in place by a thin band of tissue, called the filum. In EDS patients, though, it is very thick and fibrous and can pull the spinal cord down, causing these type of symptoms (pain, urinary difficulties). I commented that I thought it was ironic that EDS patients who have defective collagen can have too much in their filums. He agreed that it seems counter intuitive.
He went on to explain the risks and benefits of the surgery and explained, in detail, how he would perform the surgery. He has done hundreds of these surgeries and has had very few complications. Of course, ultimately, we trust in God for the outcome (and Dr. H does, too--he prays with us before every surgery!)
As part of his exam, he pulled Haley's leg up a bit, and she let out a yell. He also poked her with a safety pin and she cannot feel much in her legs. She is in constant pain, and I, for one, am so hopeful that this surgery will greatly decrease her daily pain. He said that most people feel a good bit of relief immediately, but that more benefit can come for up to a year after.
We don't know the exact date yet, but will let you all know when it will be. Yesterday at church, many folks were saying how happy they were to hear that the fainting had stopped. They said they will continue to pray, and I asked many people to pray specifically for this visit we had today. I asked that they pray that Dr. Henderson would see the need for this surgery and agree to do it. Well, that it exactly what happened. Thank you and thank God!!
Monday, February 23, 2015
Friday, February 20, 2015
Pictures of Haley "not fainting"
As I promised, here are some pictures of Haley walking in the hallway at the hospital on Wednesday. It's hard to get the impact of seeing it in still photos, but, who cares? Here goes.
We left the hospital at 6:30 pm on Thursday, and the ride home was difficult for her. The bumps in the road really hurt her incision on her back, as well as her head, neck and legs, which are her "normal" pain areas. But she's a trooper and we got home at around 10 pm. She has still had no episodes of fainting! We will travel back to Maryland on Monday to see Dr. H for a post op appointment. Hopefully, he will want to discuss doing the other surgery (tethered cord) in the near future.
Thanks again for your continued support!
We left the hospital at 6:30 pm on Thursday, and the ride home was difficult for her. The bumps in the road really hurt her incision on her back, as well as her head, neck and legs, which are her "normal" pain areas. But she's a trooper and we got home at around 10 pm. She has still had no episodes of fainting! We will travel back to Maryland on Monday to see Dr. H for a post op appointment. Hopefully, he will want to discuss doing the other surgery (tethered cord) in the near future.
Thanks again for your continued support!
Thursday, February 19, 2015
Zero is a Great Number
Haley's shunt revision surgery went well on Tuesday. Dr Henderson was pleased and said that her spinal fluid was flowing briskly, indicating that her pressure had been too high. Haley had a good bit of pain after surgery and passed out twice in the immediate post op period. Since then she has not passed out at all!!! None on Wednesday and none so far today (Thursday). That's none, nada, zilch, ZERO fainting spells!!!!! After passing out 50-80 times a day for months, this is fantastic news and we are grateful to God for giving Dr H the skills to help people like Haley.
She is still in pain, which Dr H thinks is from tethered cord. We will discuss this on Monday at her post op appointment. If he thinks she's a candidate for surgical "de-tethering" we trust that her remaining pain will decrease (or even disappear!)
The staff at this hospital has been great. They are so knowledgable and kind. They are so used to taking care of people with this disease (EDS), so it is refreshing not to have to constantly explain things. One of the people told Haley yesterday, "other places you are considered a zebra, here you are a horse!" It's nice to be a horse for a change!!
The PA, Bob came in a while ago and walked Haley down the hall. No faintiness at all!! She's as weak as a kitten from being in bed for so long, but it's just a wonderful thing to see her up and moving. Hopefully she will soon be able to do all the things a 22-year-old young lady should be doing!!
We are hoping that she will be discharged later this afternoon and I will post a picture of her walking in the hallway with Bob when we get home. I'm blogging from my phone and can't figure out how to get a picture on the blog if I'm not on my computer. Haha. At least I finally figured out how to finally blog!! Thank you all so much for your prayers and messages of encouragement to us. They mean the world to us.
She is still in pain, which Dr H thinks is from tethered cord. We will discuss this on Monday at her post op appointment. If he thinks she's a candidate for surgical "de-tethering" we trust that her remaining pain will decrease (or even disappear!)
The staff at this hospital has been great. They are so knowledgable and kind. They are so used to taking care of people with this disease (EDS), so it is refreshing not to have to constantly explain things. One of the people told Haley yesterday, "other places you are considered a zebra, here you are a horse!" It's nice to be a horse for a change!!
The PA, Bob came in a while ago and walked Haley down the hall. No faintiness at all!! She's as weak as a kitten from being in bed for so long, but it's just a wonderful thing to see her up and moving. Hopefully she will soon be able to do all the things a 22-year-old young lady should be doing!!
We are hoping that she will be discharged later this afternoon and I will post a picture of her walking in the hallway with Bob when we get home. I'm blogging from my phone and can't figure out how to get a picture on the blog if I'm not on my computer. Haha. At least I finally figured out how to finally blog!! Thank you all so much for your prayers and messages of encouragement to us. They mean the world to us.
Friday, February 13, 2015
Sometimes It's Good to Fail a Test
I thought it was time to give you all an update on Haley. She has continued to suffer from severe pain from her head to her toes (specifically head, neck, back and leg pain.) Also, her "fainting" has picked up again. She had a decrease in it after Dr. H took some fluid out of her spinal column, but it's back. As you can imagine, she is pretty discouraged. She knows that many are praying for her and she is encouraged by cards, visits and some gifts she has received. Such kind and thoughtful things have made a big difference. Thank you.
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Yesterday was a big day. We traveled to Maryland again. This time, it was to see a urologist who Dr. H referred her to so that she could have some testing done on her bladder. Apparently, if the bladder is not functioning correctly, it points to possible "tethered cord." Well, as you can imagine, the tests were no fun. They had to fill her bladder and take measurement while it emptied. (I held her hand and sang to her-- "Fill me up Buttercup!" She wasn't impressed.) Between the embarrassment and pain, she persevered and got through it. (So proud!) Anyway, there was some sort of problem with the office, so the doctor was delayed. (Side note: what is it with doctors' offices in that area that stay open so late?) Anyway, we waited 2.5 hours in a small room for the doctor to review the test with us! Thankfully, our dear friend, Kendra, was with us. I could never have taken that trip without her! When the doctor finally came in, he asked Haley several questions and showed us the printout of her test. Bottom line: she failed. (Yay!) This points to the possibility of tethered cord. I have long suspected that this was the reason for her pain and fainting. If it is, it can be surgically corrected and, hopefully, both can be alleviated. Please pray for this.
Today she has her pre-op physical and blood work in preparation for her shunt revision surgery on Tuesday. She also needs to go to the hospital and have an x-ray taken of her back so that Dr. H can see the shunt placement before surgery. Finally, we have an appointment with the Social Services department to see if she qualifies for any type of disability coverage. Hopefully, she will get a little money each month, as she is not able to work and has no discretionary spending money. If it's more than a little, she can take care of some of her medical expenses.
If you're reading this early Friday, will you pray that she can make it through all of these appointments today? I can't tell you how difficult yesterday was for her. For someone with virtually no activity level to be out for 11 hours (we got home at 10:30 pm!) and constantly sitting up, was rough. At times, she faints continually, one after the other, which she did several times yesterday. Again, Sweet Kendra, rode in the back of the van and revived her with alcohol preps while I drove like a lunatic on those crazy Washington, DC-area roads. I'm glad to be back home where traffic is virtually unheard of.
I will update this blog after her surgery on the 17th. We do covet your prayers for her and for us as we care for her. I continue to have hope that the situation will improve, and I constantly remind her that "it's not forever." We are praying fervently that that is the case. Thanks in advance, all.
.
Yesterday was a big day. We traveled to Maryland again. This time, it was to see a urologist who Dr. H referred her to so that she could have some testing done on her bladder. Apparently, if the bladder is not functioning correctly, it points to possible "tethered cord." Well, as you can imagine, the tests were no fun. They had to fill her bladder and take measurement while it emptied. (I held her hand and sang to her-- "Fill me up Buttercup!" She wasn't impressed.) Between the embarrassment and pain, she persevered and got through it. (So proud!) Anyway, there was some sort of problem with the office, so the doctor was delayed. (Side note: what is it with doctors' offices in that area that stay open so late?) Anyway, we waited 2.5 hours in a small room for the doctor to review the test with us! Thankfully, our dear friend, Kendra, was with us. I could never have taken that trip without her! When the doctor finally came in, he asked Haley several questions and showed us the printout of her test. Bottom line: she failed. (Yay!) This points to the possibility of tethered cord. I have long suspected that this was the reason for her pain and fainting. If it is, it can be surgically corrected and, hopefully, both can be alleviated. Please pray for this.
Today she has her pre-op physical and blood work in preparation for her shunt revision surgery on Tuesday. She also needs to go to the hospital and have an x-ray taken of her back so that Dr. H can see the shunt placement before surgery. Finally, we have an appointment with the Social Services department to see if she qualifies for any type of disability coverage. Hopefully, she will get a little money each month, as she is not able to work and has no discretionary spending money. If it's more than a little, she can take care of some of her medical expenses.
If you're reading this early Friday, will you pray that she can make it through all of these appointments today? I can't tell you how difficult yesterday was for her. For someone with virtually no activity level to be out for 11 hours (we got home at 10:30 pm!) and constantly sitting up, was rough. At times, she faints continually, one after the other, which she did several times yesterday. Again, Sweet Kendra, rode in the back of the van and revived her with alcohol preps while I drove like a lunatic on those crazy Washington, DC-area roads. I'm glad to be back home where traffic is virtually unheard of.
I will update this blog after her surgery on the 17th. We do covet your prayers for her and for us as we care for her. I continue to have hope that the situation will improve, and I constantly remind her that "it's not forever." We are praying fervently that that is the case. Thanks in advance, all.
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